Recommended Posts

Today I took my daughter to her 3rd GI in 2 months (for various reasons, such as insurance, we've had to look around). Her first GI did a celiac panel and a bunch of other blood tests when she found out my 2 year old has been constipated her whole life. Her EMA test came back positive and she also had a very high ESR (aka sed rate) so she has some sort of inflammation going on in her body. I have read that celiacs can have very high inflammation rates.

Well, today's doctor started out by saying he was very surprised the first doctor had ordered a celiac panel for just constipation and said he would not have - even though my daughter's came out positive! He also said he didn't think the inflammation had any correlation with celiac.

I'm not sure I trust this particular GI's knowledge of celiac and am tempted to return to my first one even though she is out of network and will cost us a fortune. But even the first GI said she did not think celiac could explain my daughter's sed rate.

I thought I might be able to find out more by asking you all to see if anyone's child also had a high rate of inflammation before they were diagnosed with celiac. (For anyone with actual #s, my daughter's ESR was 28 during the first blood test and 31 at her second blood).

Share this post

Link to post

Share on other sites

Yes, she had ttg tested as well. Her #s fell under the cut-off for it being positive but I'm told that's not too surprising given how young she is.

The GI we saw yesterday is an expert in IBD. When I asked him if the inflammation could be caused by IBD, he said it's very rare at her age and that she would be presenting with a lot more symptoms, not just constipation.

Share on other sites

May I make a somewhat wry observation here? Most of us have had to spend our medical lives avoiding the IBS/IBD doctors who wouldn't know celiac disease if they tripped over it. Maybe your "expert" yesterday learned something new, that celiac patients can present with constipation as well as diarrhea (or maybe he didn't ) My personal feeling is that your daughter would be better off with a doctor who was a little more knowledgeable about celiac disease.

ESR is just a measure of the existence of inflammation in the body. It is entirely non-specific as to causation. And yes, celiac does indeed cause inflammation. My ESR was through the roof, but that was mostly because by then I had developed psoriatic arthritis, another autoimmune inflammatory disease, secondary to the celiac and the ESR did not come down a lot until we got that under control.

I assume your daughter is now gluten free. How is she doing on the diet?

Share this post

Link to post

Share on other sites

Your new GI is ignorant. Constipation is extremely common in celiacs. And EMA is very specific...she has celiac disease.

Now...is that ALL that is going on? I can't say. I would recommend you return to your more knowledgeable GI and request an endoscopy.

Totally and utterly agree with you on this!!!!! I thought I would never be surprised again at what I hear on this forum but its happened!

As others have stated, sed rate can be extremely high from Celiac. When I was diagnosed, all my inflammatory markers were sky high, including this one.

They have all come down since going gluten-free. Also, EMA is highly specific for Celiac and if someone tests positive on that one, (I did), they have Celiac and an endoscopy isn't even needed....unless you want to put your child through this test to keep the AMA happy. Honestly, is there any other disease that makes people jump through so many hoops? Unbelievable!

The fact that the tTg was not tripped could very well be because she is so young and has not sustained enough damage to elevate the numbers. I have a great nephew who I know has Celiac. He has failure to thrive and is extremely small for his age. He has multiple medical issues, all related to Celiac, yet his parents will not put him on a gluten-free diet because the doctors refuse to say he has it. And why is that? He does not trip the blood work. They even did an endo on him at the age of 2 and his duodenum was all inflamed but there was no scalloping yet. The dumb-ass doctor told them he doesn't have Celiac. This child is the victim of medical malpractice....do not let this happen to your daughter. They wait until you are very sick to diagnose and most of the reason is liability issues. I nearly died from this disease so please believe the people on this board when they tell you your child is Celiac!

Share this post

Link to post

Share on other sites

Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR.

I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally would be so ignorant about celiac.

Since my daughter is only 2, I really would like to skip the endoscopy if possible and just put her on a gluten-free diet and see if it brings down the inflammation and gets her to a negative EMA. But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

I think I'm going to take her to the pediatric celiac clinic in San Diego next (we live in Los Angeles). I would love to be seen by someone knowledgeable. Never thought I'd be running around to so many doctors for something not that unique or obscure.

I do hope yesterday's doctor will think twice before dismissing the possibility that someone with just constipation could have celiac,

Share this post

Link to post

Share on other sites

I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally would be so ignorant about celiac.

There is no money to be made form Celiac Disease. Once you follow a gluten-free diet and healing occurs, you don't really need them so much. Health can be achieved through diet and we all know they don't go there. If most of America ate what they should and avoided the foods that made them ill, doctors would have half empty appointment books!

Since my daughter is only 2, I really would like to skip the endoscopy if possible and just put her on a gluten-free diet and see if it brings down the inflammation and gets her to a negative EMA. But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

Yeah...I heard that speech also and blew them off. I had all positives on my blood work and seeing as I was down to 97 pounds, I knew what I had to do without subjecting myself to a test that would confirm the obvious. There are valid reasons to do scoping tests but if someone has positive blood work and symptoms resolve on the gluten-free diet, then why put yourself through that? I would also resist doing one on a small child, unless really medically necessary, but that's just me. Invasive tests have risks, which need to be carefully thought about.

I think I'm going to take her to the pediatric celiac clinic in San Diego next (we live in Los Angeles). I would love to be seen by someone knowledgeable. Never thought I'd be running around to so many doctors for something not that unique or obscure.

I do hope yesterday's doctor will think twice before dismissing the possibility that someone with just constipation could have celiac,

Oh...he will! Constipation is rarely seen as a symptom of Celiac. It's all about the diarrhea!

Hope you have better luck with the next doctor. Please post for others if you come across a good one!

Share this post

Link to post

Share on other sites

My dd had the EMA and biopsy said "simplification" found only in one spot. But she has it. My husband is type 1 diabetic and they tell me this might help prevent that from triggering. She already has low thyroid. Go gluten free and hopefully save her from other worse auto immune diseases. If insurance will pay for a 2 nd opinion the. Have the blood work run again. That might make you feel better about going gluten-free.

Share this post

Link to post

Share on other sites

Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR.

But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

Cruel to have her gluten-free? I'm dumbfounded. What on earth is cruel about a gluten-free diet? I can't believe they said that! I would be running as fast as I could from THAT loser doctor!

If you ask me, it is cruel (malpractice, even) to keep a person with celiac on a gluten diet for the purpose of creating the damage they want to see before a diagnosis. Far better, in my mind, to catch it early.

Share this post

Link to post

Share on other sites

Beachbirdie...you read my mind! I think from what I've learned that the way that the medical community "confirms" celiac (by forcing people to put what is essentially POISON to them in their bodies) is CRAZY!!! There has to be progress in this area...has to...

Not to mention that these tests have a high rate (30%???) of being false negative... Boggles the mind!

Don't even get me started on that! It appears, more often than not, that this is determined by naturopaths, homeopaths or self dx... Way way way under-diagnosed imo...

Top Posters +

Upcoming Events

NEW ORLEANS GOURMET
GLUTEN-FREE mini GETAWAY
March 24 ~ 27, 2019
We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun. We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.
Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.
Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.
This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before. Check out our website for the complete itinerary and cost.
Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.
If you have any questions just give us a call at 410-939-3218.
Bob & Ruth
info@bobandruths.com
(410) 939-3218

Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.

The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.

The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.

The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com

Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts.
Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
ABOUT THE NOURISHED FESTIVALS
Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com

Forum Discussions

TDZ, I am not a doctor nor any sort of expert here, but my experiences have largely mirrored those of your husband, expect that I am 12 months ahead of him on the gluten-free diet (and now recently on the Fasano Gluten Contamination Elimination Diet --- you can look it up here). But one thing that I have repeatedly read is that neither the blood test nor the skin biopsy are conclusive for a diagnosis of DH, with a relatively high "false negative" rate, of maybe 20% to 40%.
In my case, I co

TDZ, I am so sorry to hear about what your husband is going through.
I have also experienced unusual chills more or less at the same time as DH outbreaks. Not severe chills with the violent shivering, as one can get from a repeat bout of malaria, but just not being able to get warm, even when the house is at its same normal temperature --- sometimes I would check the thermostat, almost certain that the heat had failed for some reason, then walking around the house with an extra sweater, or

I was just reading some of the biopsy threads, and I wonder -- he has lesions, all over, and has had for a couple of years to varying degrees, so even if the celiac blood test was negative due to his recent gluten-free diet, would they still be able to find it in the biopsy? Because there are lesions to biopsy next to -- those haven't stopped. Maybe he wouldn't have to go back to gluten to get the biopsy?